Anal cancer: Understanding late effects of radiotherapy

Anal cancer: Understanding late effects of radiotherapy

Late side effects may happen a few months or years after treatment. They might happen once, carry on over the long term or come and go. Sometimes they cannot be cured, but it might be possible to manage them.

You might have late effects not listed here, because everyone is different. They may also be caused by a different part of your cancer treatment. It is not possible to predict if you will get them and when they might happen, which can be difficult to come to terms with. Research and support for late effects of radiotherapy is growing.

Joining a support group can be a positive way to share your experiences, feel less alone, and come to terms with the physical and emotional impact of treatment. Ask your clinical team if you need more support or have any late effects at all.

This page looks at late side effects.

How likely am I to get late side effects?

Before treatment you will discuss and sign a consent form with your clinical oncologist or therapeutic radiographer. They will tell you what to expect, and you can ask questions and discuss any concerns you have about late effects. It’s important to know what you are consenting to and can help to take someone with you.

You can read different radiotherapy consent forms (HERE) based on the specific area being treated. These consent forms are packed with useful information about early and late side effects.(1)

When you consent to treatment, you are saying you understand that you have a chance of getting late side effects. Your team will use words like Expected, Common, Less Common and Rare.

This table shows what these words mean.

Possible late side effects

• Skin reactions: Sometimes, after radiation treatment, your skin might look different and even change colour. The skin in the treated area could look and feel different, and blood vessels might become more visible.
• Cancer-related fatigue: You might find you still have fatigue (extreme tiredness and low energy levels) after your treatment has finished. For some people this can go on for months or years.
• Bowel changes: It is common to get more wind or loose, watery poo, mucus, or discharge, and you may have a change in how your bowels work. A common side effect is needing to poo more often (frequency) or not being able to control it (urgency or incontinence). Constipation can also affect some people.
• Early menopause: Between half and all patients who have female reproductive organs will start menopause sooner than expected, because of treatment. Please speak to your team at the earliest opportunity about how this might affect you and your life moving forward.
• Infertility: You may be unable to produce a viable egg (an egg that can be fertilised) or your uterus might not be able to carry a pregnancy. Or you may not be able to make viable sperm (sperm that can fertilise an egg).
• Pain and discomfort: You might feel uncomfortable or painful around your anus and this is a common side effect.
• Bleeding: You might have blood in your poo from your bowels.
• Urinary symptoms: You may find you need to wee more often than normal.
• Vaginal changes: These can include narrowing, shortness or dryness and may impact vaginal intercourse; and the comfort and quality of a vaginal examination. You may be advised to use vaginal dilators after treatment has finished to try and reduce this risk. Your vagina can also become drier. Ask your team about vaginal moisturisers which can help.
• Change in ejaculate: Ejaculation may be a smaller amount, or dry.
• Erection issues: You might have difficulty getting or keeping an erection.

Rare or less common late effects

• Second Cancer: There is a very small chance that you could develop another type of cancer. This is rare, and depends on lots of different factors like age, area treated and radiation dose.
• Skin problems: In some cases, your skin might break down and struggle to heal (called ulceration). It may become dry, painful and thickened, like scar tissue (known as radiation-induced morphea).
• Anal fissure: This is a painful anal tear; or anal stenosis (narrowing of the anal canal) can cause pain when having a poo. This may also affect your sex life if you practice anal sex. You may be advised to use anal dilators to stretch the anal canal.
• Cystitis and pain: If your bladder becomes sensitive you might have pain when you wee and be more likely to get a water infection.
• Bowel and bladder damage: Sometimes you may need to have surgery due to a perforation (hole) or a fistula (a connection that forms between two parts of your body when it shouldn’t).
• Bone thinning: This can cause breaks or fractures in the bones of your pelvis or hip.
• Lymphoedema: Fluid can build up in your tissues and cause them to swell. Parts of your body such as the legs or genitals can feel full or heavy and your skin can feel tight or hard: and look a different colour. If you experience new aching, tingling or discomfort in the radiation area that wasn’t there before, speak to your medical team.
• Nerve damage: This is a rare side effect to the nerves in the lower back area and can result in numbness, tingling or pain in the legs.

What can help with these late effects?

• Monitoring rare side effects: Talk to your treatment team as soon as you see any changes. This can help catch and treat any serious problems early.
• Bladder care: Keep drinking water and talk to your doctor if you have trouble with weeing. Pads can help with any leaks.
• Bowel health: Professional advice on what food and drink to have can help. So can medication. Speak to your treatment team about any bowel changes and watch for any signs of blockage. Again, pads can help with any leaks.
• Sexual changes: Talk to your team if you are experiencing issues with intimacy,  sex and cancer and they can offer advice.
• Managing cancer-related fatigue: Food and drink, keeping active, keeping a fatigue diary, medicine like steroids and physiotherapy may all be options for managing fatigue. Speak to your doctor or medical team for advice; and learn more about managing cancer-related fatigue.
• Infertility: If your reproductive organs are in, or near, the treatment area, then infertility can be a common late side effect. Be sure to ask if this affects you. If it does, it’s important to discuss any plans or thoughts you have about having children from the outset. Your consultant can provide advice tailored to your situation. This can be a sensitive topic, and you may not have all the answers, but having the conversation early allows you to explore your options and make informed decisions. Reproductive organs include: ovaries, uterus, fallopian tubes, cervix, vagina, penis, testes, scrotum, prostate gland, urethra, and vas deferens.
• Drinking fluids: Drinking plenty of fluids such as water and squash can help with fatigue and tiredness caused by your treatment and also with cystitis and pain when you wee. You can try diluted juice if you don’t like water.
• Skin care: The skin in the treatment area will always be more sensitive to the sun. Always protect it by covering up and use a high factor sunblock.
• Keeping active: Gentle movement can help you feel better, both during and after treatment. Your clinical team can tell you what is safe for you to do.
• Alcohol use: Please follow the NHS guidelines on safe drinking levels and any instructions you get from your team on what is right for you, your diagnosis and your treatment. If in doubt, please ask your team.
• Stop smoking: If you are looking to stop or reduce smoking, there are services available to help you.
• Lymphoedema: There are treatments for lymphoedema (swelling \ buildup of fluid) which range from massage and compression techniques to medications so speak to your medical team for advice or referrals to a lymphedema specialist.
• Bone thinning: Your bones may become weaker in the area where you are treated. Maintaining a healthy weight can help and so can weight-bearing physical activity like walking or climbing stairs. This type of activity places gentle stress on bones which triggers your body to make more bone cells. Speak to your medical team about what is right for you.
• Dilators: Using dilators can help if anal or vaginal narrowing occurs. Speak to your medical team who can advise further.

Always talk to your doctor or treatment team about any late effects you have. Even if they are not mentioned here. Everyone is different and experiences treatment differently.  There may be ways they can help you reduce or manage symptoms.

1. Royal College of Radiologists consent forms

Further information

Learn more about side effects and support here:

Support for patients and families • Radiotherapy UK

Learn more about radiotherapy consent forms (HERE).

Learn more about radiation skin reactions (HERE).

Support for Anal Cancer Patients | The Anal Cancer Foundation

Radiation Therapy for Anal Cancer | The Anal Cancer Foundation

Anal cancer support forum | Macmillan Online Community

Help and support for anal cancer – NHS

Anal cancer resources and support | Cancer Research UK

Women’s Health Concern | Confidential Advice, Reassurance and Education (womens-health-concern.org)